Check Ups and the Vile, Blasted Scourge; Leukemia

Most all of you contributed last year to the Leukemia and Lymphoma Society last year, as a part of the run that I was doing in honor of Oliver. Do you remember that? I found out that I was pregnant shortly after committing myself to the endeavor and it was hell on earth a challenge running while so nauseous from the business of being in the first trimester.

I am so glad that I did that.

It was action: something that I could do to vent the frustration and sorrow I was feeling over seeing so many of our kids receive a diagnosis of leukemia and go through the wrenching fight. The burn in my legs and my lungs was nothing compared to the burn in my heart.

I had to raise a lot of money and that was scary for me. We don’t have a lot of money ourselves, and the LLS makes you sign something saying that you will come up with the money if you don’t raise it – you even have to give your credit card number. I was shaking but I decided to take the plunge and trust that you all would catch me.

And you did.

The last person that donated – for the full amount of money that I needed to close the pledge, some $50+ was a lovely woman in England. I sent her a thank you card and received a thank you for the thank you (smile). I think there was a word or two after, but then long a silence until just recently when she wrote to me out of the blue.

You see, very suddenly and unexpectedly, her own very healthy young daughter with Down syndrome was diagnosed with leukemia. She has just entered the hospital, in which she will remain for 6 or more months.

Just writing about it is making me cry again and I pray – as she asked me to – that her daughter Edith will be healed soon.

Please join me in that prayer. If you don’t pray, please send all your best wishes, thoughts, vibes, energy – whatever you want to call it – send her that loving light you keep in your heart space.

And let’s try to keep it coming.

*****

Following the news of Edith, I went to the hospital and arranged to have a check up immediately for Moxie.

We haven’t had one in…oh gosh…a year? At least.

I know, you don’t have to tell me. I suck. I know. I know. Okay. I am trying to change.

Micah led the way for her, having the doctor fake-check him. Moxie was compliant thanks to that, everything was sound.

We arranged to have an eye exam next month, maybe some OT (occupational therapy) at some point in the near future. Then we had to go for the all important lab work, the core reason for our check up. Get some blood samples to test her thyroid and cell counts and so forth. This should really be done every 6 months and I’m definitely going to step up on this.

Even if it’s as awful as that blood draw was. This is just too important to not do, you know?

She was crying, sobbing in my arms, her little stomach tensed in. They had the devil of a time accessing her tiny veins, but she sat still through their repeated poking, crying so terribly that I was crying too.

Awful. But we’ve simply got to do this.

That’s why I’m writing this post: let’s pray for Edith and her mother. And be vigilant about checking our kids. Sometimes – especially if our little one doesn’t have any medical issues – it can be so easy to be too busy to go in for that blood work, but we’ve got to be on top of this.

We go annually now. And I’m so, so sorry to hear about Edith. I don’t know how old she is, but my understanding has always been that in *most* cases, leukemia is diagnosed in children with Ds *before they turn 3.* Don’t know how accurate that is, but I don’t actually know of any who were diagnosed for the first time older than 3. I remember breathing a sigh of relief once Samantha passed that age. My thoughts are with Edith and her mother, hoping to hear good news as time goes on.

A journey we know well. Life for us, for Zoey, was 8 months of inpatient with small reprieves in between.

I wore a shirt at the start of each of her round. It simply said “Leukemia Sucks”. And it does. I am changed. Some for the better, some for the worse because of that journey on that floor. What I saw was this inexplicable combination of sorrow and beauty.

Zoey and I speak and recruit on behalf of LLS. I have no doubt that my girl and many other childrn with DS are here today because of research and clinical trials funded by LLS. The statistics for our children with an extra chromosome, fighting leukemia, from then to now, and the prognosis and the hope, has dramatically changed. That, for the better.

So thank you. For raising the money. For spreading the word. Fro sharing Edith’s story.

Sidenote:I have a blanket organization I started after Zoey was released form treatment. We deliver and send blankets to children fighting cancer. If you have Edith’s address and feel comfortable sending it to me, let me know. I would be honored to send her one.

Thank you for sharing this post. Yes we go through the testing yearly at least and it is the part about Ds I dislike the most. Sitting with Flynn as he is sobbing, knowing that as his Mum I must make this happen is heartbreaking, but i will continue to do it. best wishes to Edith and her family!

I am Edith’s mum. Thank you Meriah, and thank you all for your prayers and healing love for our little girl. She is 21 months old, still a baby. We have finished round 1 of chemo and are waiting to start round 2, of four in total. Please keep us in your thoughts over the coming months x